Follow up

I had a doctor’s appointment on Wednesday, and my pulmonary function numbers were slightly up from the previous week. It looks like I did benefit slightly from additional time on IV antibiotics, but it wasn’t significant enough to go through the hassle of getting me another PICC line and starting them up again, so I am officially IV free! In terms of the DVT (Deep Vein Thrombosis, aka clot), I need to be on anticoagulant medication for the next 6 weeks and then have an ultrasound to see if/how the clot is improving. Fortunately I’m on a newer drug that can be taken orally instead of via injection, and doesn’t need weekly blood tests, so I just pop a pill twice a day and I’m set. The main risk, of course, is injury: Since anticoagulants reduce your body’s ability to clot, any injuries have the potential to be more serious or bleed uncontrollably. Fortunately I have a pretty chill lifestyle, and I’m only minimally klutzy, so I should be ok. Just don’t invite me to join you in any extreme sports for the next few months, ok?

Unfortunately, there will likely be some permanent damage to the clotted veins. The pain and swelling are expected to improve (and already have!), but those veins may always be a little sluggish and that arm/hand may be prone to swelling. More concerning is that those veins won’t be able to be used for PICC lines in the future, which could be an issue over the years as I continue getting PICC lines and other veins start wearing out. Also, since I will be getting more PICC lines, we need to try and keep this from happening again – once you’ve had one DVT, you’re at greater risk for having another one. So I’ll be having a consult with hematology to determine whether some medication changes could have contributed to the clot, what other meds we could try instead, and whether I should be put on anticoagulants preventively whenever I get PICC lines in the future. Fun fun!

Overall, I am very grateful that this wasn’t worse, and that I’ve passed the main risk period for serious complications. And I’m even more grateful that I’m breathing and walking SO MUCH BETTER than I was when this month started. Onwards to better things!

Success!

I'm going home!

So close...

WE FOUND A PHARMACY! Buuuut... Insurance is requiring prior authorization... The hospital staff are gonna try to negotiate and see if they'll give me a 4 day supply so I can go home while the authorization is processed. We've got almost 2 hours to figure this out before the pharmacy closes. Fingers crossed!

Self advocacy

Today has been a lesson in self advocacy.

The vascular surgeon I saw this morning was the same guy they consulted with last night. And he basically said the same thing: The clot is in a superficial vein, I don’t need blood thinners, come in for a follow up on Tuesday. He acknowledged that the ultrasound had missed part of a deep vein, but said they could check that on Tuesday. Well I wasn’t about to do the dance we did last night or settle for incomplete care, so I pushed for doing the ultrasound today. He wasn’t sure we’d able to since it wasn’t an emergency, but said he’d try. Well guess who got an ultrasound within the next couple hours? I also told him to contact my CF doctor. If he’s so sure this isn’t a big deal, let him convince my CF doctor of that himself!

A little later the ultrasound results came back… And found that the clot had spread from a superficial vein in my arm to 2 deep veins in my shoulder/chest. Which makes this officially a Big Deal. Dr. Vascular is lucky he wasn’t the one to discuss those results with me, because I was furious at his complete misread of the whole situation. Thank G-d my CF doctor stood up for me last night, so that I was able to stand up for myself today and get this addressed. I don’t even want to think about what we’d be dealing with if this was left untreated until Tuesday.

How many people would have just trusted the expert and jumped at the chance to go home? It’s truly frightening how much of medicine is dependent on the patient's knowledge and advocacy. Don’t be afraid to stick up for yourself if something doesn’t feel right. “Experts” aren’t always all they’re cracked up to be.

The big question now is can we find an open pharmacy and get a prescription for blood thinners filled on Christmas, or will I have to stay one more night. So far the quest has not been going well… Please send positive vibes (and, if you have it, open pharmacy info) my way!

Drama

Well that was fun.

I woke up this morning to find my IV arm swollen and discolored, which is not a good sign. A couple phone calls later I was on my way to the ER. Turns out I have a blood clot in my arm, which is a potential complication of PICC lines, so it had to be removed. The ER doctor was concerned that I wouldn’t be able to fill a prescription for blood thinners to treat the clot over the holiday weekend, so she planned to keep me inpatient overnight and get things started. But then, she consulted with a vascular surgeon, who reviewed my scans and said I could go home as long as I came in for an appointment on Tuesday, and monitored for worsening symptoms in the meantime. My mom and I weren't completely comfortable with that plan, but figured the vascular surgeon should know what he’s talking about. BUT THEN, the ER doctor followed up with my CF doctor, who was unwilling to leave a clot untreated and unassessed until Tuesday. In the end, I was admitted for the night and given a blood thinner, and the vascular team at the hospital is going to assess me tomorrow and decide on a course of treatment. Not exactly how I wanted to spend my Shabbos and first night of Chanukah.

Since it was likely that the antibiotics would’ve been stopped on Wednesday anyway, we’re not rushing to put in another PICC. I’ll continue getting antibiotics while in the hospital, but will stop when I’m discharged until we see how I do at my follow up appointment. Fortunately this happened at the end of my treatment instead of at the beginning!

I’m such a drama queen. I’ve had countless PICC lines in my life and never once had a clot. Of course the first time it happens is on Shabbos during a holiday weekend. Thankfully it wasn’t worse, and HOPEFULLY I’ll be able to go home tomorrow!

Not quite there yet

Well, things are heading in the right direction, but they’re not quite where we’d like them to be just yet – so the IV stays in for another week of antibiotics and hydration. I kinda thought that might be the outcome, because though I’m feeling significantly better, I don’t feel like I’m at my best yet. I was disappointed that my numbers weren’t higher, but I may need to put more effort into that by doing more nebulizers and airway clearance. I started slacking a little as I started feeling better, but I need to remember that I AM still in a CF exacerbation, and even though I’m not in the hospital I still need to keep myself on a hospital-style treatment and airway clearance schedule. Just with more sleep, and better food!

I’ll be home alone this Shabbos, and depending on how cold it is I may need to stay put, but company would be lovely if anyone wants to join me!

Progress and Pokemon

Things seem to be moving in the right direction, thankfully. I’ve been having fewer coughing fits, and I’ve noticed more endurance and energy over the last couple days, so the antibiotics seem to be doing the trick. I’ll find out at my follow-up appointment on Monday, where we’ll see how my numbers are after 2 weeks of IV antibiotics and hydration, and decide whether to continue treatment or pull the IV.

I’ve been trying to lay low, what with the whole being hooked to an IV pole multiple times a day thing... BUT laying low isn’t exactly my strong point, so I’ve had an adventure or two. The most notable is that I schlepped out with my afternoon antibiotics, which come in a syringe and a self-infusing medi-ball and therefore don’t need an IV pole, so that I could go… Pokemoning! I went to Camden on Sunday afternoon, and drove around the City Hall/Rutgers/Aquarium area collecting Pokestops and Pokemon. Which of course meant there were various points when I was parked on street corners in Camden, the crime capital of the country, infusing drugs into my arm and looking SUPER SKETCHY. Good times! The important thing though is that I caught LOADS of Pokemon, so it was TOTALLY worth possibly getting mistaken for a drug addict and/or arrested!

I’ve also been working on a durable, marketable version of Pole People. Stay tuned for further developments!

Oh, and I suppose I may as well mention… I finally designed business cards and updated and formalized my Etsy shop, which currently has a few pieces of handmade jewelry for sale. I plan to create and add new jewelry pieces, as well as Pole People if I ever pull together a workable design, and possibly other pieces of art. Feel free to check out and share www.DreamspiredDesigns.etsy.com!

Going home!

The junk in my chest is loosening up, my med dosages are stabilized, and I’m getting out of here! We’re working towards discharging me this afternoon so that everything can get set up and settled with the home care company without crashing into Shabbos. I’ll still be on IV fluids and antibiotics for at least another week, but I’ll be doing it from the comfort of my own home. Very much looking forward to decent food and a quiet, comfortable, full night of sleep!

Pole People!

A new hospital means... A new audience for the Pole People! They're kinda feisty this time around, and simply refused to limit themselves solely to the confines of an IV pole. Such hopeless show offs!

Bureaucracy and big decisions

Hi-ho, hi-ho, to the hospital I go!

Honestly, the last few months have been difficult on multiple levels. Let’s start with the bureaucratic mess. Over the summer, Cigna sent me a lovely letter saying Oops! They started my disability payments 3 months early, and overpaid me a couple more times in the following months, please send back almost $4,000, thanks! After some haggling, they started withholding $200 from my monthly check until the balance is paid off. At around the same time, I found out that my Medicaid coverage was ending as my monthly disability income is too high. I thought I could get on a different Medicaid program with higher income limits for people with disabilities, but they require 10 working hours per week, which I can’t reliably or consistently commit to. So I sorted through Healthcare Marketplace plans, none of which actually provide adequate coverage for my extensive, expensive medical needs. Eventually I settled on one that covered my CF clinic in Philly, had a mostly affordable premium, and had an out-of-pocket max that wouldn’t completely break the bank. And then 2 months later I got to do it all over again, because the plan I selected won’t be available in 2017. Isn’t being an adult fun??

Aside from that, my health has been kind of hovering on the edge ever since the summer. Though the IV hydration helped briefly, my pulmonary function numbers started dropping again as soon as the hydration ended. Aside from the frustration of trying to push through low endurance and low energy month after month, it was also frightening knowing that I was basically a sitting duck, and one tiny respiratory infection would likely be enough to trash my lungs and land me in the hospital. By the end of October, my numbers had dropped below where they were when I went on IV hydration in July.

And that’s when the next headache started.

I love my doctor. He’s been treating CF forever. I first started seeing him when I was a teenager (and he wasn’t young then!). He’s quirky and funny and knows his stuff. He also, frequently, drives me completely insane. We’ve had many arguments about my treatment over the years, usually ending with both of us frustrated, sometimes with me in tears. He uses antibiotics sparingly, and prefers to focus on long-term lifestyle changes, mostly involving reducing and controlling my cough to prevent ongoing damage to my body. The wait-and-see method and only pulling out antibiotics as a last resort has mostly worked for me over the years, but less so since my health has deteriorated. I finally reached my breaking point in October, when my numbers were so low, yet he didn’t discuss them or suggest any treatment, and instead spent the whole appointment lecturing me about my cough. After sitting on it for a few more weeks, I finally decided it was time to try something different, and scheduled an appointment with one of the other doctors in the clinic.

It was a tough decision, but I think it’s the right one. I’m ready for a fresh perspective and more aggressive treatment. I know I’ll never get back to where I was prior to 2014, but I do think I can feel better than I have these last few months. So I’m going inpatient for a few days to get started on IV antibiotics, and then will be finishing out a 10-14 day course of treatment at home. And hopefully soon I’ll feel better than I have in a long time!

Freedom!

IV free is the way to be!

I decided that keeping the IV in for another month was just more than I'm willing to deal with, and that I deserve to be unencumbered for at least part of the summer. So yesterday the nurse came out and pulled the PICC line, and today I removed the pressure dressing, and I am finally freee! Now I just need to stay on the hydration/airway clearance/nutrition/exercise bandwagon, and maintain both my weight and my lung function without the support of IV hydration. My doctor is really, painfully good at giving lectures, so here’s hoping I can keep it together and not get an “I told you so” speech at my next appointment!

Stalled

So the good news is, my pulmonary function numbers are still very decent. The bad news is, they haven’t improved any further, and are the same as they were 2 weeks ago. The worse news is, my doctor isn’t yet confident that I can maintain this level of lung function without IV hydration, particularly during the current heat wave. So I’m doing 10 more days of IV hydration, and then he would like me to keep the PICC line (a fancy, long lasting IV) in for another month while we see how I do without hydration, so that I can easily resume hydration if necessary without needing to have another line put in.

Honestly, I was not in my happy place today. I am thoroughly tired of being chained to an IV pole 8+ waking hours a day. I am also tired of persistent discomfort in my arm from the PICC line, and of having to wrap it up with plastic and tape every time I take a shower. And I’m definitely tired of being mostly homebound, since I’m hooked to the IV much of the day, and I’m unwilling to travel too far from my homecare provider in case something goes wrong with the PICC and I need assistance. I know it could be far worse, and thank G-d my health is stable enough that I only have these relatively minor irritations stressing me out. That being said, it is turning into a long, boring, lonely summer.

On the plus side, however, there was a SPECTACULAR thunderstorm this evening, which I greatly enjoyed. I even went outside and stood on the porch to take it all in and feel some of the wildness of the wind and rain. So that was kind of Hashem to send some phenomenal extreme weather that I could safely experience and enjoy, which provided a much needed distraction and lifted my mood. Also, I took a shower, and it never ceases to amaze me how much something so simple as feeling clean can lift your spirits.

So that’s my story… Stay tuned for continued installments of Eliana’s Medical Adventures.

Progress

Just got back from the doctor, and thankfully the hydration seems to be doing the trick. After a week of IV fluids my pulmonary function tests showed significant improvement, so it looks like we won’t need to bust out the big guns (IV antibiotics) this time around. Yay! I still have room for further improvement though, so we’re keeping me on IV fluids for the next 2 weeks. Less yay, but manageable.

I spent most of the week in a barely functional haze of exhaustion and shortness of breath, but I’ve been feeling more comfortable and alert over the last few days, for which I am extremely grateful. Hopefully I’ll continue improving until I actually have the energy to be annoyed about being tied to an IV pole for most of the day. Having enough energy to get bored and be irritated with limitations is a definite sign of improvement.

That being said, I’m feeling more up for visitors, if anyone is looking for low-key adventuring. Especially if you want to push me around town in a wheelchair on a Pokemon collecting scavenger hunt! 

When life gives you doctor's appointments... catch Pokemon!

Amusing myself at the doctor's office

Oh hey, I can't breathe. Again.

The problem with having both CF and seasonal allergies, is that it can be difficult to determine which one is causing your breathing issues. Well, I’m sure I could come up with more problems than just that if I put my mind to it, but that’s the one I’m dealing with currently. I’ve been getting increasingly short of breath over the last few weeks, but I chalked it up to allergies and a possible reaction to the dosage of my allergy shots being increased. Until last week, when I started feeling REALLY gross, and my allergist was so alarmed by my symptoms that she put further allergy shots on hold – but also said that she didn’t hear any wheezing. Finally it occurred to me, a bit belatedly, “Hey, maybe I should call my pulmonologist!”

You’d think, after 37 years, I’d have this figured out. You’d be wrong.

Boy do I know how to waste a holiday weekend. I wasn’t on IVs, but I was completely exhausted, and the slightest exertion left me breathless. Of course the whole exhausted-and-short-of-breath thing meant I also wasn’t thinking terribly clearly, so I had the same stupid thought spiral countless times: “Hey, I should check out [fun holiday weekend activity]! …No, wait, I’m sick. I’m not going anywhere.” Sigh. I’ll just have to make up for it with a SUPER FABULOUS time next year. Who’s in?

After trying REALLY HARD to hydrate during the last week, and seeing limited improvement, today we finally threw in the towel and threw me onto IV fluids. I haven’t been feverish or unusually congested, so my doctor thinks that I have “plugs” blocking up my small airways, trapping air, and reducing my lung capacity. The hope is that getting me SUPER HYDRATED via IV fluids will help break up some of the garbage in my lungs and make it easier to clear out. Right now I’m scheduled to be on fluids until Friday, but I will very likely be chained to an IV pole through the weekend, if not longer. I also managed to lose a not-insignificant amount of weight, which is never good. Sometimes I feel like the only woman on the planet who’s dismayed to see the numbers on the scale go down. After a lecture about the importance of maintaining adequate caloric intake, my doctor said that between improving my nutrition and getting hydrated, he wants to see me “fat and floating” by the time I come in for a follow up next week. How’s that for a mental picture?

In a bizarre way, it’s actually kind of nice to have my decision to stop working validated. There have been times when I felt like maybe I wasn’t trying hard enough and should be doing more. The fact that I’ve been struggling to keep my health under control even without the stress of working, however, tells me that it was the right decision. Being sick sucks, but it’s definitely a relief to have taking care of my health be the only job on my plate.

So, anyone wanna keep a cranky exhausted person company for Shabbos? Doesn’t that sound so super fun??

Pulse envy

That moment when you hear that the patient next door's pulse is 66, and your immediate reaction is "WOW! Is he ok? Wait... Is that normal??"

I got this. Mostly.

That moment when you're so stupidly determined to be independent that you drive yourself to your doctor's appointment, despite being exhausted and out of breath.

Living with CF is…

•  Trying not to trip over or become entangled by various types of tubing and medical equipment as you rush around trying to make yourself presentable before work.
• Actually tripping over tubing and medical equipment on an embarrassingly regular basis.
• Being surprised when people are grossed out by mucus. Doesn’t everyone have an up close and personal relationship with their mucus?
• Occasionally forgetting to cover your mouth when coughing, because you cough so often that you don’t even notice anymore.
• Rolling your eyes when people dart nervous glances in your direction and edge away at the sound of your cough.
• Ditto when people do the same at the sight of a medical mask covering your face. This is for my protection, buddy, not yours.
• “I’m having a bad air day.”
• Being able to eat whatever you want without worrying about your weight (at least until CFRD strikes).
• Sitting on the ground hacking up mass quantities of blood and trying desperately to catch your breath, then reassuring a concerned police officer that you’ll be fine and he doesn’t need to call an ambulance.
• Your special someone saying, “You need to hydrate, you taste salty.”
• Packing a bag before going to a doctor’s appointment, because you just know you’re about to be admitted.
• “I can’t breathe. Why can’t I breathe…? OH, right.” *puts nasal canula back in*
• Feeling a sickening jerk inside your stomach when the feeding tube unexpectedly gets caught on something, and wondering if that’s what a Portkey feels like. (http://harrypotter.wikia.com/wiki/Portkey)
• Having disheartening familiarity with gastric juices due to feeding tube malfunctions.
• Waking up in a cold, sticky puddle of nutritional supplement, and realizing that the tube accidentally detached during your overnight feeding. Again.
• Never knowing when you’re going to stink up a bathroom or clog a toilet with your rancid digestive issues. Bonus points for public humiliation.
• “That sounds bad…” “Oh no, I’m fine, this is actually my healthy cough.”

Perspective

I once encountered two very different people on the same day. One was an older single who struggled with the fact that yet another birthday was fast approaching. The other was a young bride anxiously awaiting her upcoming wedding. The single woman could easily look at this bride and feel pain and jealously that she has sought her husband for so long while this young girl found him effortlessly.

But she would be wrong. Because I know something that the older single doesn’t. I know that this young bride suffered the terrible, life-altering trauma of being raped when she was a child. She continues to struggle with the impact of that horrific event, particularly as she approaches her wedding day. Coping with singlehood was not this girl’s struggle. Being raped was.

If you could choose between the struggle of being single and the struggle of being raped, which would you take?

~~~~~~~~~~~~~~~~~~

 “You can eat whatever you want and still stay so thin? You’re SO lucky!”

Maybe. But would it ever occur to you that the reason I stay so thin is because a terrible disease is slowly destroying my body from the inside out? The freedom to eat as much chocolate and ice cream as I want is nice, I will admit… but the price tag is medications, and hospitalizations, and surgeries, just to try and push death off another day. Not to mention the pain and exhaustion that is part of my daily struggle to live the normal life you take for granted. All the ice cream in the world can’t compensate for that.

~~~~~~~~~~~~~~~~~~

Look at your struggles, and be thankful… Be thankful for the struggles that God chose NOT to give you.

Sickness and (mental) health

Getting disability benefits from Social Security is a notoriously tedious, drawn out process. So it was with great surprise and tremendous gratitude to Hashem that I discovered, barely 2 months after starting my application, that I have already been approved and my first payment is in the bank! The first payment from my employer’s long term disability plan also went out today. Between the two of them, I will not only have enough money to pay the bills, but even little extra so I can enjoy the occasional leisure activity without feeling guilty. Baruch Hashem!!!

I had an interesting realization yesterday. I’ve been handling all these medical issues and major life changes remarkably well, and have felt particularly calm since December when I found out that I was approved for long term disability benefits. I have somehow learned to accept the physical limitations and medical uncertainty, and just roll with things as they happen. It occurred to me yesterday, that I don’t know if I could have achieved the same level of emotional well-being if I hadn’t gotten sick. Since I was a teenager, the idea of getting sick and becoming disabled has been my biggest nightmare. I always lived with a certain degree of fear for the future and anxiety about my health. I also had a lot of frustration over how difficult it was to manage my medical issues while also holding down a job and trying to pay the bills. It often felt very unfair to have to push through these daily living tasks that seemed at least twice as hard and took so much out of me.

Now, however, the nightmare has come true: my health has deteriorated, and I can no longer work full-time and support myself. And instead of being terrible and tragic, it’s just… fine. This enormous fear that loomed over me for decades has been revealed as being completely manageable, and I’ve found that life can be full and meaningful even if I’m less-able. If I hadn’t gotten sick, I would still be living with that monster under the bed, waiting for it to jump out and grab me. Instead, I have a renewed faith that everything will be ok, and that I can manage whatever life throws at me. Additionally, I no longer have to force my body into overtaxing tasks in order to support myself. For the first time in forever, I can just BE, listening to my body and taking care of myself without worrying about other responsibilities. It’s so wonderful to finally have a break.

In a bizarre twist, being sick has finally allowed me to have peace of mind. Who knew?

Homeward bound!

And the verdict is: Discharge!

Thankfully last night was far easier. I still had reflux and wasn’t able to tolerate my full overnight tube feeding, but I wasn’t nauseous like the day before. We’re finishing up some meds and labwork now, and in a few hours I will be a free woman!

I fully expect to be a mess for a few days post-discharge. Returning from the hospital is always a shock to my system, particularly considering I haven’t had any semblance of a decent night’s sleep in over a week. I should be fine after a few days of hibernation, and then it’s back to work rebuilding my stamina and maintaining my lung function. Maybe I’ll even go out for a meal on Shabbos!

Thank you all so much for your support and well wishes. Even though I couldn’t necessarily respond to everyone individually, I saw them all and they made me smile!

Setback

Everything has been going so well, far better than anyone anticipated when I was admitted over a week ago. Until last night. After a miserable, restless, reflux-filled night, I unexpectedly vomited this morning. I needed anti-nausea meds to settle things down, and my stomach was twitchy the rest of the day. No clue where that came from, however my doctor is hesitant to discharge me if there’s any question whether I’ll be able to stay hydrated once off the IVs. So, tonight is the test. If all goes well, and today was just a random fluke, I could be discharged tomorrow – however, if I continue having problems, I’ll be here until it’s resolved. What an annoying thing to keep me trapped here!

Seriously?

Nothing like being asked by your nurse, "So Cystic Fibrosis, were you born with that?" to inspire confidence. Especially when shortly afterwards I had to explain my antibiotic infusion schedule and tell her how to run them.

(I'd tolerate it better if there hadn't already been similar educate-the-staff moments with at least 3 other nurses. I shudder to think what my care would be like if I wasn't functional, knowledgeable, and coherent.)

Overachiever

First walk without supplemental oxygen! I also met the other CF patient doing the CF Shuffle down the hall at the same time. I lapped her though, because I'm an overachiever. 

Pole People

The Pole People have arrived! Because an IV pole is just an empty canvas awaiting decoration. 

Plugs and positivity

Friend: I love your positivity

Me: Well it's easy to be positive when you have a beautiful plug to look at

Patience

It’s been a bit of a mixed bag the last couple days. I’m still dealing with a lot of upper respiratory irritation, which causes coughing spasms, which causes more irritation, etc. The extremely dry air definitely isn’t helping, and my voice is shot. On the other hand, I’ve been far less dependent on supplemental oxygen. I’m mostly on room air when at rest, and the amount of oxygen needed when walking has decreased. So things are definitely moving in the right direction, and faster than expected! As my doctor reminded me yesterday, however, it took time for me to slide down to this point, and it will take time to work my way back up. No quick fixes here.
Patience. Foy! 

I'm not crazy, I'm just a little unwell

Silver lining or insanity? Every time I reach for the plug from my IV pump, I think, "It's so pretty!"

Snowpocalypse at Presby

Thank you for all the likes, comments, emails, texts, and phone calls! They definitely make me feel loved!! Special thanks to Frank D'Amico, who braved Shoprite hours before the snowstorm, Rachel Uderman Klein, who reached out to and connected me with Chabad of Penn, and Rabbi Levin from Chabad of Penn, who made sure I had delicious food for Shabbos.

Hospitalization was definitely the right call. Last night I was a bit of a fever-and-chills, body aching mess. Fortunately I’ve been fever-free today and feeling a bit better. I’m on supplemental oxygen, which is definitely reducing the strain on my body and making me feel more comfortable. I’m also receiving hydration via IV 24 hours a day, which has helped loosen up the junk in my lungs and made it easier to clear out. And nebulizers and prednisone and IV antibiotics, oh my! I’m usually hospitalized a minimum of 7-10 days, but in the last year and a half I’ve been slower to respond to treatment, so it may be 2-3 weeks. I’m thinking 2 weeks is the most likely. Anyone wanna start a betting pool? 

It was actually kind of comforting being in a medically safe space while watching the storm spend its fury outside my window. The ice also froze into interesting patterns, so I have decorative window art courtesy of mother nature. I hope it’s still there tomorrow so I can take a picture!

B”H I’m feeling MUCH stronger than the last time I was hospitalized in Sept-Oct 2014. I’m very appreciative of the fact that I’m alert and have some energy. I even took a couple (slow) (brief) walks around the unit today. And visitors are definitely welcome! With the caveat that I nap at random times, and have nebulizers and chest PT 4 times a day, so I’m never entirely sure when I’ll be available to socialize. Also, no perfumes, or flowers, or anyone with a cold or any other respiratory illnesses please!

Back to the hospital

My lung functions have been hovering on the borderline for the last month or so, but I've been hanging on. This week, however, I seem to have come down with something, and that pushed me right over the edge. My oxygen level and spirometry numbers are down, and the slightest exertion has me panting. What with snowpocalypse coming, my doctor doesn't want to risk having things go downhill after I'm snowed in, so this afternoon I'll be off to Presbyterian Medical Center in Philly for a "tune up." Fortunately I don’t feel anywhere near as terrible as I did back in 2014, so hopefully it will be a much easier hospitalization and recovery.

I’m honestly not surprised. I’ve been averaging a “tune up” about every 6 months lately, so I’ve been waiting for the next round back in the boxing ring with CF. It would’ve been nice if wasn’t the one and only weekend when absolutely no one will be able to visit me though. I’m also super disappointed to miss out on Panoply with my awesome team! I suppose breathing comes first though.

One of my NCSY advisors (you know who you are!) used to love the analogy of life as an EKG. The EKG is made of ups and downs, and you need both of them to live. My good news last month was an up, and now I’m in a down, and hopefully soon will be yet another up. B”H that I have the zechus of being here to keep experiencing both the ups and the downs!